Abstract

People with learning disabilities (LD) constitute a significant minority in the
UK, a conservative estimate being about 2.5% of total population. Approximately
a quarter of this number are known to statutory service providers. The complex
nature of the problems faced by many of these people necessitates a
multi-agency approach, sometimes involving specialist services. An immediate
consequence of this situation is that data for research, policy, local service
development and support for the individual are distributed amongst numerous
organisations. These data rarely have consistent structures and meaning.

Objectives

The project assessed the user requirements and technical feasibility of
e-science technologies for the delivery of health and social care data. In
order to do this the project: (1) identified and examined existing data and
information sources, both individual level (from surveys and administrative
sources) and aggregate; (2) built up a firm understanding of the user
requirements both for policy and research, via structured interviews and
workshops, (3) examined the technical feasibility of joining up disparate data sources
within the service providers using Grid-related technologies, especially in
terms of ontologies, web services and distributed computing.

Methods

There was extensive engagement of the user community, including structured
workshops to explore users' views and understand their requirements. The focus
will be on the East of England, and include NHS trusts (local Primary Care and
Mental Health trusts), Essex Local Authority, charities and possibly, Strategic
Health Authorities.
However as well as the workshops, wider links with the Department of Health,
the social science community, e-science community, and international health
knowledge community were utilised.
The technical team engaged with other e-science and e-social science projects
to ensure that wider developments were used and that the findings of the
project were fed back to the scientific community via e-science and computing
conferences, project visits, presentations to the local health and social care
communities and publications.

S. Musgrave, U. Kruschwitz, and D. O'Neill. "Confidentiality Issues
from the User Perspective - Lessons from Learning Disability Services".
In Proceedings of the First International Conference on e-Social
Science, Manchester, 2005.